OUTLOOK When Peggy Rosal, 63, started experiencing trouble in her stomach, she had no idea the breath-taking pain was being caused by a rare form of disease
Worse, it took months for her doctors to discover the source and cause of her pain.
“I was having a lot pain, and after several trips to the emergency room, I ended up having surgery to remove little tumors in my bowels,” she said.
Thinking her blockage issues were cured she went home, But the tumors kept coming back.
“I have what is called NET (short for neuroendocrine carcinoid tumor),” Rosal said.
Finally in 2014, she was diagnosed with neuroendocrine carcinoid, a form of cancer that attacks the lining if the gastrointestinal tract.
Because of the aggressive nature of her case, the cancer metastasized into her liver.
“I’ve have had much of my intestines removed and now must survive on a liquid diet,” she said.
She said she wanted to share her story as most people have never heard of her cancer.
Because Aug. 10 has been named National NET Awareness Day, by the National Neuroendocrine Tumor Research Foundation, Rosal felt she needed to share her story.
“People ask me all the time what NET is,” she said.
“There is no known cure,” Rosal said.
According to the NET website, the carcinoid tumors that occur in the digestive tract and pancreas release the substances they produce directly into the hepatic portal vein (a blood vessel in the abdominal cavity) which carries them directly to the liver where they are metabolized (broken down).
Since the liver metabolizes these substances, their message is not sent to the rest of the body. Consequently, tumors of the digestive tract and pancreas are not usually detected until they have metastasized to the liver or cause obstructive symptoms.
When carcinoid metastasizes to the liver, the liver is not always able to metabolize of the hormones secreted. This excess of hormone called hypersecretion can cause an array of symptoms called carcinoid syndrome
For Rosal, the odds were good she wouldn’t develop the disease since studies show that 4 to 5 out of every 100,000 people are diagnosed yearly with a neuroendocrine tumor. But she was not lucky.
According to the NET Foundation, there are more than 100,000 people living with neuroendocrine tumors within the United States.
For reasons not well understood, the incidence of carcinoid is rising.
Since most individuals with carcinoid are asymptomatic until the tumors metastasize, the average time between tumor development and diagnosis is between five to 10 years.
“It’s a sneaky cancer,” Rosal said.
She said her symptoms first presented with flushing, weight gain and then loss and the fatigue. They are all indicators of a variety of other diseases – from menopause to Crones’ disease.
Survival rates for individuals with carcinoid vary and depend on tumor type, location, extent of metastases, and many other factors, a fact that weighs heavy on Rosal mind.
“But I must keep going each day and doing the things I must do,” she said.
Rosal has already undergone many surgeries, considered the only cure for localized tumors (those which have not spread). But there is no cure for metastatic carcinoid.
There are some medicines that can treat the disease.
“But companies won’t pay for the medicines because they are not specifically designed for NET,” Rosal said.
For now, Rosal just wants people to be aware of the disease.
“I tire easy,” she admits. “But I have energy enough to help raise awareness.”